Happy Grateful Blessed with Tami Tran

Rachel Brown Parry- Congenital Muscular Dystrophy (Muscle Eye Brain Disease ) MEB

April 29, 2019

Join me and my guest co-host, Shelley Winget as we laugh, cry and learn from Rachel Parry what unconditional love and sacrifice looks, and feels like.

In this episode, Rachel, Carson's mom explains what it's like to care for a child with disabilities, and shares lessons she's learned as she's found herself through her special son. 

When Carson was 16 months old, he was diagnosed with a very rare form of Congenital Muscular Dystrophy -Muscle Eye Brain Disease (MEB). It's an inherited disease.

There are only between 15-20 diagnosed cases of MEB in North America. It's that rare.

MEB causes Severe Migraines/Headaches, Depression, Muscle weakness, vision abnormalities, brain structure abnormalities, severe intellectual disabilities. There's no cure.  Carson can't walk or speak.  He's learned to say Maam to call for his Mother, and imitate certain sounds to communicate. 

Carson is 15 years old, he has a great sense of humor and loves to laugh. His favorite song is "Splish-Splash I was taking a bath." He's protected and loved by the family dogs and adored by his classmates in school and treasured by his family at home. 

In her spare time, Rachel works as a substitute teacher. She loves the children she teaches as she brings to the classroom a special ability to notice the children that need extra love and support. 

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